Newbie- Looking For A Read On Peripheral Neuropathy W/ Autonomic Issues- Ebv/lyme Maybe

[Lindz]

Hi Everyone! I will try to make this short, but I can really use some help. This is the second time I am going through the dr merry go round. This has been over two years. I told my husband I feel like when I started I jumped into the river and screamed "Im drowing" with my head above the water; now I feel like only my pinky is sticking up. Feel like everyone has been on riverbank just looking at me go down... I know thats a dramatic place to start but thats how it feels. I am a 46 yr old female.

In summer 2013 in my sleep I began to have weird pressure headaches and the feeling of adrenaline shooting up into my head and making my heart rate go up. That happened for a few months and then I began having atypical facial pain/cranial headaches in all distributions - occipital, trigeminal and glossopharyangeal for the past 2 years. These "attacks" would come with burning eyes, dizziness,arrhythmia, nausea and my face would get all stiff, almost like a mini seizure. This was preceded by feelings of intense head pressure rushes. Once I was hospitalized and my prolactin was 44 - which they said can happen after a seizure. But I was awake for these episodes. They said migraines. Brain MRI normal except for some microhemmorages and a white spot they can't say what it is.

Anyway, as time went on I began to get burning sensations in my arms and legs and tingling, numbness, joint aches in feet and ankles. Shoulder and neck were the worst. Burning mouth syndrome. Nose tip cold. EMGs negative. Dr. said probably SFN, but no biopsy taken.

Then a well known Lyme dr said I know whats' going on you have reactivated EBV. Also Lyme specific bands so probably Lyme. So Ive been treating for a year and getting worse.

Now I am officially scared.

Other things are piling on, like when I fall asleep at night, I stop breathing within seconds. Like I am conscious of this and sometimes if I doze off, I wake up in five minutes with chest pain and not breathing.

I feel like I am rocking on a boat while I am sitting. OTherwise balance is ok.

I have very low blood pressure but don't feel dizzy or faint when I stand.

Lastly, I have TERRIBLE TERRIBLE palpable ANXIETY. Just typing here I am shaking my leg and fidgeting. The littlest tasks overwhelm me, esp getting my kids ready for school. I feel jumpy (thryoid levels okay, barely).

Did blow a fuse in my autonomic system? I can't do this anymore. I feel like I present to doctors I present with this anxiety and they think its psychological. I feel like a switch went off in my brain and I feel psychotic. Any neuro drug Ive tried makes it worse.

It definitely sounds autoimmune of infectious. 15 yrs ago I had a 6 month episode just like this (a little milder). It went away on its own. Now its back with a vengeance.

I also have something called a polyclonal gammopathy (igm) in my blood that indicates infection or inflammation. Its been there for 15 years. I do have a positive very low ANA and anticardiolipin antibodies. Always negative on rheum antibody tests. Something is in my body doing this. I had one dr say it cant be EBV because I don't have EBV DNA in my blood by PCR. As for Lyme, I have lyme specific bands but my lyme dr is not sure if I was just "exposed" to lyme or if I have lyme disease. I have no idea what difference that makes - doesnt make sense to me.

Does this sound like I have a dysautonomic element to it?

I feel acute, like it has impacted my brain. Its that bad. I wish someone would just hook me up to an ivig or give me SOMETHING to try like a steroid, etc.

I guess Im asking can dysautonomia do this to a brain or would I be showing other symptoms (loss of balance, falling, etc. etc.)

I am going back to a rheum, neuro and infectious disease dr in next two weeks. I am terrified that no one will have any idea. Should i mention dysautonomia, am I even in the ballpark?

I have three kids and Im snappy and crying and my husband is frustrated with me. I don't want to go out and even do errands anymore. Every chore is overwhleming to me. I am so scared at whatever hijacked my body.

Finally, do you need referrals to mayo, hopkins, etc. I am afraid at this point who would even refer me, I think they think Im nuts !)

Your stories are all inspiring. I need some hope!

L

[Lindz]

Oh and I should add that i do have MVP and hypermobility. In fact my valve was so bad that I needed a valve repair 8 yrs ago,....

[Sylvie33]

Dear Lindz,

I am also going through a long and frustrating process of disentangling my symptoms while feeling very sick. This is is so hard I know.

I have a very confusing presentation: a very long history of depression(yet it was episodic and I was highly functional at all times). I also had surgery for a benign brain tumor in '98 as well as a brain hemorrhage in '02. Beginning about two years ago, I had a toxic reaction to antidepressants that caused Parkinsonism (for over a year -- no one could figure it out), then suddenly last Thanksgiving, I had severe allergic reactions to food and my meds and lethal levels of high blood pressure. Because of the allergic reactions, I was told by a physician substituting for my PCP to go off all antidepressants cold-turkey (horrible advice). So then I had antidepressant "abrupt withdrawal" syndrome too.

I was recovering a bit (BP controlled over months, no tremors, etc. -- also no depression at all), but then then got walloped with dysautonomic symptoms and the worst episode of depression of my life this past April. All the more difficult because I could not go on anti-depressants, though I began a very low dose of mirtazipine a few months ago.

I have been more or less bedridden since then with severe fatigue, GERD (new since withdrawal) other digestive issues, terrible insomnia (now improving), an anxiety that has defied description, as well as increasing peripheral neuropathies in extremities. I have much brain fog and it takes so much effort just to sit at my computer to type this. I had to take a work leave last year. Is part of this depression (surely -- I am also very much missing working), yet is something else going on? Well, that is why I am writing you now. Maybe.

What I am doing about all this: I have finally found a great psychiatrist/neurologist (yes, board-certified in both) who takes all of the symptoms seriously and is acting as what he calls "my quarterback" with the other doctors. I made many, many phone calls to find this guy. He and I agree the line between "physical" and "psychological" is fiction -- especially regarding symptoms involving my autonomic nervous system. His involvement has been invaluable-- my initially skeptical neurologist (who is performing testing) is taking me very seriously: for the QB has called him several times.

Dysautonomic symptoms, by definition, tend to blur the boundaries. "Adrenaline surges" or "anxiety," feel the same. Yet, I know depression increases the odds for all sorts of illnesses, and having a chronic illness also increases the odds for depression. I am stuck in the middle with both perhaps, yet I don't yet know. This may or may not be your story too.

As for where I'm at: my depression is finally just beginning to lift, yet my autonomic symptoms have not. I just had an EMG, which I knew would be negative (for I have no difficulty with motion or balance), but this test was required (by insurance) before small fiber testing: I had the biopsies for this last week; I really hope they are negative. I also had an endoscopy and a "Bravo" test for GERD -- very positive with a recommendation for surgery. I am getting another opinion, for this doctor did not look at the big picture here.

I am now doing CBT for the depression, which is very helpful. I have an appointment with a specialist in dysautonomia for November 5 (took me five months to be scheduled!). I sort of wished to skip this, for my insurance does not cover if, but the QB is insisting.

So I am basically suggesting you pursue both routes, if you can, as well. Having "physical" symptoms should not deter you from getting counseling/therapy while you pursue getting the tests you need to rule out or confirm reasons for such things as your neuropathies and such.

I know this is all confounding, and made far worse by skeptical physicians who seek the simple answer of "anxiety." As I told the initially skeptical neurologist doing my testing, I would be extremely pleased if I have no measurable nerve damage.

As I have told others, it is so hard to do the research on Drs. when ill, but do try and talk on the phone with them (or another medical professional in their office) before you see them. One good doctor can make all the difference.

---Sylvie

[Lindz]

Sylvie! Thank you so much for responding. I am sorry for your journey as well. I have a very similar beginning which I left off - when this all started I went to a trusted psychiatrist. He tried all different meds on me and I too, reacted very paradoxically. More anxiety. I also feel somewhat betrayed by him because I felt he was always debating me on whether it was mental or physical. Actually now that you say it, he was trying to tell me the same thing you did about the blurring of the lines. So I shouldn't be too harsh on him, in retrospect. I feel helpless. Like this is so critical and emergent to me and yet you wait 5 weeks or 5 months in your case for an apptmt only to be told they don't know! I am literally decaying by the day.

But yes, it is on my list to get either back in touch with him or someone else. Regardless of whether I get an answer or not, I need some mental support here, big time! No one needs to live with acute anxiety, whether its generated from the body or mind. There needs to be something that will work on this!!! I need to figure out what it was in the klonipin amtriptyline and others (an anticholineragic) that set me off even more.

Thanks again for responding.

[corina]

Hi Lindz! Welcome to our forums! Please keep in mind that there is always hope! Once you've fond the right doctors to work with they may get you back on track! I do think you need to be referred to the autonomic clinics but I'm not familiar with your health care system (I'm in Europe) so others may be able to help answer that question!

[Sylvie33]

Hi Lindz (and all)

Thank you for your kind response! I was concerned you might think I was not taking your symptoms "seriously" when I wrote about therapy. You appear to be such an open, good-hearted soul!

Like you, I simply cannot believe what I am experiencing is NOT tied to dysautonomia. Just too many symptoms to list, and all of them new since April (except GERD which started last fall).

I do get respite at night from a small dose of Klonopin --.25 mg (.5 pill broken in half) up to 3x each time I wake (2-3 times/night). I do not feel comfortable taking this drug, so I do not take it at all during the day.

I did have a near-normal day on Monday, which was a huge relief. But crashed yesterday and it seems so far, today.

I am glad for this site -- it is so level-headed and helpful!

---Sylvie

[shadesofgrey49]

Read your post, Lindz. How are you doing?

[headhunter]

Do your feet get red and hot or just burn??